Mandating genetic counseling prior to cancer genetic testing

What does it mean for patients?

Jessica Everett

Jessica N. Everett, MS, CGC, U-M Genetics Counselor

Up to 5-10% of cancer diagnoses are caused by inherited gene mutations. Identifying patients and families who may carry these mutations is important because it can often lead to medical interventions to promote early detection or risk reduction. Genetic testing is the gold standard for identifying inherited mutations related to cancer risk.

As is true with other expensive medical procedures, genetic testing is most beneficial and cost effective when targeted for patients and families with suggestive personal or family history. Testing for the most common inherited cancer syndromes, Hereditary Breast and Ovarian Cancer syndrome and Lynch syndrome, can cost up to $4,000 for a single patient. The UnitedHealth Center for Health Reform and Modernization reported in 2012 on combined data from UnitedHealthcare, Medicare and Medicaid, estimating that $5 billion was spent on molecular tests nationwide in 2010. Growth trajectories estimate that this number could rise as high as $15 to $25 billion by 2021. Increased use of molecular testing is likely to contribute to increased overall healthcare spending, but appropriate use of testing could also improve health outcomes and thus decrease costs.

A study conducted by ARUP Laboratories found that review of genetic test orders by genetic counselors over an 11 month period identified 100 tests per month (at an average total cost of $36,500 per month) that were incorrectly or inappropriately ordered. These errors, when uncorrected, lead to delays in medical decision making and increased diagnostic costs for all patients without improving health outcomes.

Health care providers, researchers, testing laboratories, and public health officials are interested in identifying patients who are most likely to benefit from genetic testing, while at the same time reducing money wasted on unnecessary or incorrect testing. The goal is to utilize limited health care resources to benefit the largest possible number of people. There are several approaches to this problem including efforts to track utilization of genetic testing, educate health care providers about identifying at-risk patients, and encourage insurers to cover appropriate tests.

In a new approach to these problems of patient identification and appropriate test utilization, a major insurer (Cigna) announced in July a new Genetic Testing and Genetic Counseling Program which will require its customers to undergo genetic counseling with a board certified genetic counselor or medical geneticist prior to undergoing testing for hereditary breast and ovarian cancer, colorectal cancer, and Long QT syndrome (an inherited heart condition).

This represents the first national insurer to implement such a plan, with the goal of reducing unnecessary testing and limiting potential anxiety and physical harm that can occur when a patient has inappropriate genetic testing. The policy has raised some concerns among patient advocacy groups, who worry that limited access to genetic counselors may discourage high-risk patients from having genetic testing. In an effort to address these concerns, Cigna has partnered with InformedDNA, a company that provides genetic counseling services by telephone for patients who may not be otherwise able to access services.

Ultimately, whether it proves to be successful or not, the program will provide useful data about utilization of genetic counseling and testing services and patient and health care provider preferences that could help guide policy and programs in the future.


ARUP Laboratories, Value of Genetic Counselors in the Laboratory.  White paper, March 2011. (pdf)

UnitedHealth Center for Health Reform and Modernization. Personalized Medicine. Working Paper 7, March 2012.(pdf)

National Society of Genetic Counselors, Genetic Counseling Program Gives Cigna Customers Increased Access to Genetic Counselors, Press Release, July 2013. (pdf)




The University of Michigan Cancer Genetics Clinic provides counseling for people with a personal or family history of cancers that may have genetic links. If a link is confirmed, our specialized physician and genetic counselors will develop a plan for additional screening or lifestyle changes to help reduce cancer risk.


CCC 25 years button150x150The University of Michigan Comprehensive Cancer Center’s 1,000 doctors, nurses, care givers and researchers are united by one thought: to deliver the highest quality, compassionate care while working to conquer cancer through innovation and collaboration. The center is among the top-ranked national cancer programs, and #1 in Michigan for cancer patient care. Seventeen multidisciplinary clinics offer one-stop access to teams of specialists for personalized treatment plans, part of the ideal patient care experience. Patients also benefit through access to promising new cancer therapies.

2 thoughts on “Mandating genetic counseling prior to cancer genetic testing

  1. avatar
    L.L. Bruzzone on said:

    Welcome to the genetic testing wars…its going to get worse before it gets better.

    “Whether it proves to be successful or not…” Genetic testing is about protecting families and saving lives. Genetic counseling does not reduce anxiety, but it does save costs. This is not about the patient. The patient should have a choice.

    How could someone even consider this, without asking patients whether or not it would be successful? Where is the voice of the patient in all of this.

    This isn’t about patients. Its about CIGNA wanting to save money and reduce costs by singling out three classes of individuals with genetic conditions of 700,000 different conditions.

    This is about InformedDNA, a commercial genetic testing company, in June, stating they believed legislation should be initiated requiring genetic testing of everyone who may have a hereditary cancer syndrome. It was about money, not concern for the patient. It was part of what motivated InformedDNA to strongly endorse dropping patents, despite the face, the pharmaceutical companies were the only persons educating medical physicians.

    For them, it is about cashing in on the “genetics game,” and making a hefty profit.

    Requiring genetic counseling will only put Lynch syndrome back to year 2009, when 30,000 were diagnosed, at an average of ten per year in major cancer centers. This is deplorable, when when one in every 370-440 people have Lynch syndrome. It shows genetic counseling to be a barrier to testing and that is exactly what CiGNA is looking at. As stated, they are looking at saving money.

    With panelized tests now entering the market, there is no “wrong test.” These tests not only test for Lynch syndrome but for dozens of other hereditary cancer conditions. There is no “difficult test.” There is simply a test which is the same cost of an MRI, which is given every day, of which physicians are capable of performing and treating, especially oncology experts. The insurance company simply doesn’t want to pay to diagnose patients, they want to make it difficult enough for them, that the patients will NOT get diagnosed.

    Why? Because private insured patients only last with an insurer for six years. It is the average turnover time. When these tests come out, they don’t want to pay for them. They want to wait for individuals to get a colorectal cancer and use MSH-IHC test which takes much longer to diagnose, but is much less expensive. They want to take the risks of having one person in a family get a cancer and essentially become a sacrificial lamb, playing Russian Roulette with cancer survival, so others in that family can live.

    There is no excuse for MSI-IHC testing for those with colorectal cancers, when a test, which is much quicker and can allow individuals to make surgical decisions is readily available. And, finally, individuals will be tested for a variety of hereditary cancer syndromes…therefore, more lives will be saved and more money in the long run.

    For the patients, it is a required copay for yet another service and not one, but TWO visits, payable to InformedDNA, when they can hardly afford medical costs as it is, for them AND their family members.

    It is about spending three days of their lives, engaged with individuals who will determine whether or not they should receive a genetic test for cancers, before they will be allowed to take the test. For the patient it is an incredible inconvenience which will increase anxiety.

    For the patient, it is a form of discrimination, singling them out from others with hereditary cancers, and
    insinuating they are not capable of making their own choices. It puts them into a different class…a lower class and singles them out as “being different.”

    It removes any and all choice over the needs or desires of the patient. It forces them to discuss sensitive family issues with strangers, which will be documented on insurance databases. It requires information about family members which will be submitted to the insurance company.

    Finally, it interferes with the doctor-patient relationship. The physician needs to know about Lynch syndrome to make certain the patient is managed.

    Bottom line is everyone should have a choice, not be required to spend three days of anxiety, in required services of a genetic counselor, if they do not wish it.

  2. I actually really want to save this specific blog post, “Mandating genetic counseling prior to cancer genetic testing |
    UofMHealthBlogs.org” on my very own page. Would you mind if Ido it?
    Thx ,Alyssa

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